Relatively newly diagnosed and thankfully improving though with no clear answer as to why.  A little over two years ago is when acute symptoms started though remember having some sooner, or I associate them but may be related to my recently discovered allergy.  

I started a new medication, trazadone and did not react well, general nausea that did not go away and in general feeling bad, took for 4-5 days and stopped.  Felt better and a few days after went hiking with a gal.  Not a great day, during wildfire season and was quite smokey, but cute gal.  By end of hike was light headed and not feeling great but nothing I didn't chalk up to the smoke and exertions.  Next morning woke up feeling what I imagined a heart attack felt like, intense chest pain and heart palpitations, left side was weak and loss of some sensation.  Did not worsen and went to doc next morning.  Took blood work and did heart tests, I did have lower platelets in that test ~90, and I felt woozy like I had given too much blood.  Went through cardiologist but heart is healthy, with platelets dropping was referred to hematologist.  Through him was eventually diagnosed with ITP.  My platelets continued to drop till this last spring to low 70s and since them has rebounded to 138.  Symptoms I regularly experience and associate: light headedness, cold extremities, fatigue, brain fog, weakness, shortness of breath, temperature intolerance (easily cold or hot)/thermoregulation issues.  While not directly associated I have regularly experienced diarrhea  since around this began as well, though may be earlier.

As I have been pursuing things I discovered I have a significant mold allergy to Alternaria tenuis, recently in last two months started immunotherapy treatment.  Started treatment long after the platelet turn around though and does not appear as yet to be improving or harming things.  Other things that I have noticed and additional history; I have had gastro issues (heartburn mostly but quite severe) since I deployed to Afghanistan 2012/2013.  I have discovered I have hiatal hernia likely from an injury sustained.  While deployed I took doxycycline and took primaquine at end of deployment.  I feel strongly that my GI issues are related to my ITP, in general noticing GI distress and ITP symptoms correlating, and as part of treatment for GI was prescribed double dose of omeprazole.  During initial 8 week treatment is the only time between initial onset and this springs turn around that my platelets improved, and dropped immediately after stopping.  I also noticed symptomatic improvement.  Right before my climb began again this spring I started taking omeprazole again regularly and have since.  I know its not supposed to positively affect platelets and have ruled out any GI issues that would negatively affect this such as gastritis, though have not had colonoscopy so UC is possible.  No food allergies confirmed, but after some rabbit holes I do seem to be inflamed by foods high in histamine, tomatoes and alcohol especially, with bananas being an exception that usually helps instead, and these are hardly uncommon heartburn triggers so may be nothing.

I thankfully did not get to requiring direct treatment and my diet long before this started was quite good consisting of whole foods, I'm a big gardener and often grow 6 months of my own vegetables or more.  But I have been more cognizant and can always adjust things.  I reduced and for about 6 months eliminated all drinking before starting again.  I take b12, magnesium citrate 1-2 week, citracal + 5/week, and a few months ago started taking a fiber supplement which has eliminated the diarrhea.  I have ADHD and have been taking my medications on and off again, as I have noticed it sometimes contributes to worsening some of my symptoms, mainly the cold extremities, but I have dialed the dose in to not seem to inflame it as much.  I also take antihistamines when I go in for the shot, allegra currently and that seems to work best so far.

As I have started immunotherapy for the allergy I have noticed some increased spikes in some of my symptoms immediately following like cold extremities, tight chest, light headed.  It is quite possible that some of the symptoms I have associated with ITP may be more closely related to the allergy, though also could simply be closely tied to each other.  For a few years i did take Benadryl as a sleep aide but stopped a few years before this all started.  Its possible it held my allergy in check and once stopped started building in my system.  I do recall times before ITP started having sudden onsets of lightheadedness and weakness while working outside but mostly attributed it to being out of shape at the time.  Cold extremities though is only with onset that I can recall.

I also have been dealing with for last 2ish years tendonitis, left and right arms though right arm mores severe as I had injured my elbow and wrist in2019 and never fully healed.  I also have a mystery tightness in my back knees and lower legs that started a little after this and has not been diagnosed and comes and goes in severity with stretching helping.  I have made progress but have been resistant to healing even for a tendonitis injury.

Would be very interested to know if anyone has had GI and ITP issues that seem related and have found ways to improve it.  Same for allergies.  While my Hematologist is great, dealing with specialists is frustrating, they don't want to see the human body as connected at all and my primary care is fine but overworked and mostly a referral mill for me and occasional check up.  I strongly wonder if the antibiotics while deployed contributed.  I have also read some things on histamines in food and am considering trying that to see if improvement occurs.  

In general my blood work is good, though I seem to have naturally lower hematocrit and hemoglobin levels, they have stayed consistently just below the norm line to just on it, most recent is a little higher but time will tell if that is a trend or not.  Since May my Abs immature grans are slightly elevated .1 K/uL, they were elevated when initially started treatment for a few months before going down till May this year.  My SGPT/ALT has also been elevated since May, 69 IU/L.  It was also in beginning and also went down, no cause determined by GI doc.  Is possible since the mold is mostly active during warm season that it is related to exposure to it, though doesn't explain lack of elevation in 2023.

I'm sure I'm forgetting something.  I'm glad my situation has improved though frustrated that there is no clear reason for it improving, last winter was miserable.  Appreciate any advice or suggestions.

I figured I'd better get recording my Doptelet/Avatrombopag usage before I start forgetting. A continuation of the "My Promacta Journey" thread, which I maintained as a treatment history of my time on Promacta/Eltrombopag.

After failing off of Tavalisse (blood pressure issues, which is too bad, because I think it was working for my counts), I was giving my body a few weeks to recover before starting the Doptelet. My counts were in the 30s and 40s, which seems to be my current normal.

Unfortunately, a few weeks ago I ended up dropping down to 19k. This drop, of course, had to coincide with my monthly bleeding, so on to the Doptelet I went in a hurry. Luckily, the Doptelet actually increased my counts decently fast. I was having horrific bleeding (what else is new :eyeroll:), but I managed to get it stopped before a hospital visit was needed. Of course, now I'm very anemic (hemoglobin is around 9 and hematocrit is also low *sigh*), but it's good to know that Doptelet did something positive in a timely manner.

Related lab results
31 March 2021 platelets 19,000 (last count before starting Doptelet)
07 April 2021 platelets 39,000 (about a week after starting the Doptelet)
15 April 2021 platelets 104,000
21 April 2021 platelets 80,000

So, That 104k count was a bit concerning, because I'm very paranoid about not getting too high on a TPO-RA drug (stroke risk! aaaahhh!). However, the following week with the 80k seems good. That's plenty high for me to actually visit the dentist (I haven't had a count good enough to go in at least 2 years). I'll add to this thread as I continue my weekly lab work until I see some kind of stability with the new medication. I go in to see my hematologist this week, so we'll see what he has to say, but it looks like Doptelet is working great so far. No real side effects, just some headaches at the beginning, which have since tapered off as I've gotten used to it.

I had Janssen vaccine Wednesday afternoon. On March 7th my platelets were 142,000 and April 7 hours before vaccine were 170k. The day after vaccine my platelets were 162. So not much of a drop. Assume this is within a 'normal fluctuation of daily platelet numbers that happens to everyone. Does anyone know if that is the case?
I looked at some other blood markers related to overall immunity the day after my vaccine that may be related to ITP: Lymphocytes dropped from 1.7 down to 0.9. Neutrophils went up from 1.6 to 2.9, White blood cells though still a little low went up from 39 to 44.Hemoglobin went up from 13.3 to 13.9. Hematocrit went up from 40.7 to 42. Red blood cells went up from 4.15 to 4.27.
Here were my side effects from Janssen vaccine:
About 20 minutes after the vaccine for about 10 minutes had a hot forehead and got red faced. Was waiting near site so no thermometer to test temp. Also, about that time had minor neurologic symptom of numbness in underside of tongue that after a couple hours became a tingling of right half of my tongue on the anterior section. It is like when you first get numbing agent from dentist where there is tingling. Still have this four days later, but have had this happen when starting other Western pharmaceuticals also when initially taking them.
Evening of shot was more fatigued but next day had more energy. 32 hours after shot was hit with biggest side effect. Developed strong muscle pain from injection site into shoulder joint. Had had bursitis from tournament tennis 45 years ago and had then a cortisone shot but haven't had that level of pain in shoulder for many years. Took pain medicine that normally works for strong pain but it didn't phase this. Called nurse who said 48 hours window is when vaccine reactions occur and she'd been getting a lot of calls about the Janssen vaccine side effects (Just released in WA State and a lot of people are getting it!). Nurse suggested more pain medicine which I did in addition to my sleeping med and I was able to sleep. Next morning still had stronger than usual pain and took a generic Celebrex, stayed in bed 1/2 the day and when I got up the pain was reduced. Now at day 3 after medicine pain in shoulder is down to a 1-2 level. All in all that was for me not a big deal and I am thankful to have actually had the choice between JnJ, Moderna or Pzier and that I chose JnJ for less likely to have hyper-immune reactions given my history of ITP, allergies, fibromyalgia and CFIDS. So glad to be vaccinated!

dona, I like to use the PDSA 'search' capability a lot. For example, here is a search on the words 'red' and 'hematocrit' on PDSA:

pdsa.org/discussion-group/search.html?query=hematocrit%20red&searchdate=all&order=inc&childforums=1

I read through the first page. All the discussions were about low hematocrit. Might want to read through yourself. Also, because of misspellings, you might want to search on 'hemat' word fragment too.

About Rituxan. After reading about it, it scared the pooh out of me too. It was only the low chance/probability of an adverse reaction that got me through it.

Hi all,
I haven't submitted a question in a very long time but, after my latest blood tests results, I wanted to reach out to see if others have had this experience also. A little background first - I was initially diagnosed in Jan. 2014 with ITP and given the standard treatment at that time of high doses of prednisone. I would stabilize until the dosage was systematically lowered then my count would plummet dramatically. This went on for several months. Then, my doctor tried the dexamethasone route for awhile but that treatment would only give me a temporary spike in count and then I would plummet again after a couple of weeks. Next, we went the IVIG route on my insistence. Same results - temporary spike then much lower counts (up to 100,000 then down to below 10,000). My hematologist wanted to go straight to Rituxan and surgery. I was scheduled to start the Rituxan but then backed out after I researched the side effects. I already didn't feel like myself. I had given up working out, yoga, outdoor activities, etc. at the insistence of my hematologist and I was tired of feeling bad. So I travelled to see an environmental doctor after I started taking Liposomal Vitamin C and Glutathione. He ran extensive tests on me, as had other doctors, and I had no other health problems/diagnoses aside from ITP. His only concern was my very low platelet count (below 10,000) and the fact that some substances had shown up in blood and urinalysis testing that shouldn't have been there - primarily ethylbenzene, benzene, styrene, o-xylene, (in my blood) and chromium (in my urine). We discussed the possible reasons for these results and arrived at the hypotheses that, since I live in a town where both an oil refinery and a tire manufacturing plant are located and these substances are used in those industries, these solvents/essential elements were probably affecting my environment and I was absorbing them through air & water. This doctor was out-of-network as far as my insurance was concerned and I couldn't afford to continue seeing him but he advised me to keep up with my liposomal therapy as well as my aloe vera. Fast forward three years later to now-my clotting time is normal as measured by PT and has been for two years while my platelet count is around or below 16,000. (All of my platelet counts for the past 3 years have been below 16,000). Recently, my latest CBC shows that my red blood cells and my hematocrit is slightly elevated. My doctor did not mention this development to me and I only found it by going over the latest CBC test results. Has anyone else had this experience? Should I be concerned? The reason I decided to ask on the forum is that I have learned far more from reading posts here than from my hematologist, who currently isn't technically treating me now because I've refused all of her suggestions for treatment, and my GP who is learning along with me as I'm her only ITP patient. Any help or information you could provide would be appreciated. Thanks so much!

Hello,
New to this discussion. I'm very interested in the general approach to Promacta headaches. I started 50 mg Promacta two weeks ago. After one week, platelets 54,000, high normal HCT. After two weeks, 75,000, above normal range HCT, but now I'm getting daily, morning headaches. I get migraines, so I started taking my imitrex which constricts vessels and headaches resolve, but I can't take this daily! It seems from the posts I've read that the strategy is to maintain platelets around 50,000 to avoid headaches, is that about right? Question: what is causing the headaches? I'm thinking increased cell count (my hematocrit went significantly above normal) is causing my vessels to swell to accommodate and swelling vessels in the brain equals headache. I guess the additional megakaryocytes, platelets, immune-mediated platelets, immune-mediated megakaryocytes all equate to more cells and larger cell complexes. Anyway, I'd like to know if the 50,000 number is a good target. I talked to my hemo dr. about reducing the 50 mg dose, but she said, "no", it's not indicated unless I go much higher. I'm tempted to just cut the 50 mg tab in half and take 25, but I'm afraid to do that. If I get enough responses here to keep at 50,000, I'll just have to tell her sorry, it's my body and I want to maintain at 50,000. By the way, I did Winrho for probably 8 years, first sporadically then more frequently until I was getting treatment every 2 months. My hemo dr. never ran kidney function tests. I saw Dr. Liebman with USC Keck School of Medicine for a second opinion because a bone marrow biopsy I insisted on getting from my regular hemo dr. showed mild reticulin fibrinogen and my RBCs started going high normal. Dr. Liebman ran oodles of tests. My gfr is low normal for my age and he said he suspects I might have some kidney damage from repeated hemolysis events--when your RBCs lyse, the hemoglobin, but more particularly, the iron is toxic to the kidneys. I thought this only happened on the rare occasions you developed HUS (hemolytic uremic syndrome). Word to the wise who are taking Winrho: get your kidney function tested periodically. I'm seeing a nephrologist in January to see what's going on. He also thinks my high RBCs are from sleep apnea (JAX-2 was negative). Thanks, everyone, for your suggestions re: headaches and optimum platelet number to avoid them.

Hi,
I just thought to cut and paste so you could see all my numbers today. They are wanting to schedule a BMB.
Here are my questions...
1. Platelets only went from 8,000 Friday to 15,000 today. All I got Friday was IVIG. Do you have any thoughts on what could be causing the slow climb?
2. How does IVIG effect bllod numbers? MY WBC were down from 2.8 Friday. Could that be due to IVIG Friday because that is just what happened when I went to Mayo? IVIG Friday and 1.8 WBC Monday.
3. Do you think doctors need to do the BMB? They have nurse practioners and PAs doing them.

Todays LABS in case it is helpful to you.
White Blood Cell Count 1.8 10*9/L 4.0 - 11.1 10*9/L
Red Blood Cell Count 4.51 10*12/L 4.18 - 5.64 10*12/L
Hemoglobin 12.9 g/dL 12.1 - 16.3 g/dL
Hematocrit 39.0 % 35.7 - 46.7 %
Mean Corpuscular Volume 86.5 fL 80.0 - 100.0 fL
Mean Corpuscular Hemoglobin 28.6 pg 27.5 - 35.1 pg
Mean Corpuscular Hemoglobin Concentration 33.1 g/dL 32.0 - 36.0 g/dL
Platelet Count 15 10*9/L 150 - 400 10*9/L
Red Cell Distribution Width CV 13.3 % 11.7 - 14.2 %
Segmented Neutrophil Percent 32.3 % %
Lymphocyte Percent 40.9 % %
Monocytes Percent 22.2 % %
Eosinophils Percent 2.3 % %
Basophils Percent 2.3 % %
Immature Granulocytes Percent 0.0 % %
Neutrophils Absolute 0.6 10*9/L 1.8 - 6.6 10*9/L
Lymphocyte Absolute 0.7 10*9/L 1.0 - 4.8 10*9/L
Monocytes Absolute 0.4 10*9/L 0.2 - 0.9 10*9/L
Eosinophils Absolute 0.0 10*9/L 0.0 - 0.4 10*9/L
Basophils Absolute 0.0 10*9/L 0.0 - 0.2 10*9/L
Immature Granulocytes Absolute 0.0 10*9/L 0.0 - 0.05 10*9/L
Thanks for any insights.

It's been awhile since I have posted to this forum. I have not had to see my hemotologist for about 7 years. I have been managing my platelets fairly well with eating right and resting when I over do it. Well, I found out recently that even though I'm doing ok with platelets ranging from 50,000 - 80,000, I should still visit my hemotologist every few months to get my counts checked. I've always had heavy menstrual periods, however; this last one I had, I bled for over two weeks, I literally felt like I lost all of my blood, I ended up in the hospital, I found out has a cysts that ruptured, I did not have much pain with this and thought I was having a heavy period. I was given a shot in the arm to stop the menstrual bleeding. It kind of worked. I was still bleeding when I saw my gyno the next day. My gyno scraped my cervix twice to help stop the bleeding as well and put me on a low dose birth control pill. I'm very mad at myself for not taking care of this years ago. I just kept putting it off, knowing that my period are heavy. Really bad idea. I want to be around for my grandkids, I have a 4 granddaughter and 11 year old grandson. They are my world and need their nana around more than ever! I also have 4 grown kids.

My blood counts are very low blood counts, Red Blood Cell Count 3.31 x10(12)/L (Low), Hemoglobin 9.7 g/dL (Low), Hematocrit 29 % (Low), Eosinophils, Absolute Count 1.5 x10(9)/L (High), Urea Nitrogen 7 mg/dL (Low), Iron Total 22 mcg/dL (Low), It was pretty scary and a wake-up call for me to take my disease more seriously. I feel horrible!!!! Worst fatigue ever even though my platelets went up to 104,000 probably because of the shot of decadron I was administered in the hospital. I just had an iron infusion last Wednesday, my body seemed to take it ok, and next Wednesday I will get another iron infusion. I also went to see my gynocologist who has put me on a low dose birth control pill to hopefully lighten my bleeding. I'm actually scared to have a period, my body needs to recover from this last loss of blood.

I'm thinking about trying another dose of Rituxan. I tried it 7 years ago, the medication did raise my platelets however; they went back down again after a few weeks which was very frustrating for me.

Hi, Karen and all. My iron dropped to dangerously low levels after internal bleeding caused by a fall last summer when my platelet count was less than 5,000. I was able to restore functional iron levels (hemoglobin and hematocrit) by taking a combination of Dessicated Liver capsules and whole food Vitamin C, along with Longan Fruit, a dried Chinese fruit snack recommended by Chinese herbalists as a blood builder.

Specifically, my iron saturation level was down to 4%, my red blood cells decreased in size, and my hemoglobin was at 11%, on the edge of anemia. After four months of taking the liver, vitamin c, and Longan fruit, my CBC last week showed my hemoglobin was back to a healthy 13% and my red blood cells showed no signs of anemia. My iron level went from a low of 15 in February up to a normal 50 as of last week.

The protocol I used involved taking 4 of the Dessicated Liver capsules at lunch 5 days a week, along with juice from one fresh-squeezed orange or the equivalent in powdered whole food vitamin C (not ascorbic acid), and then eating some of the Longan fruit as a late afternoon snack. Instead of taking the Liver capsules, you can substitute eating six ounces of fresh liver from grass fed beef once a week.

This is my adaptation of the protocol for raising iron levels recommended by the Magnesium Advocacy Group, a Facebook group with over 90,000 members dealing with a wide variety of autoimmune disorders. That group's focus is on balancing minerals, especially magnesium and iron, along with zinc, and copper, and increasing levels of the hormones that make them functional, especially Ceruloplasmin. They have no special knowledge of how to deal with ITP, however.

The head of this group, a health coach named Morley Robbins, has done a lot of research on iron utilization by the body and doesn't consider ferritin to be the best marker of uself iron levels, as it measures stored iron rather than active iron. They recommend you get the full four-test iron panel: serum iron, unbound iron, iron saturation level, and total unbound iron). But since itp patients get so many CBCs, we can tell from those if our blood cells and hemoglobin are being affected by iron issues even without the iron panel. My hematologist runs both kinds of tests, and my iron panel numbers seem to mirror my CBC red blood cell measures.

I find the MAG group's food-based protocols helpful in general, although some of their recommendations (such as taking cod Liver oil for vitamin D) don't work for people with low platelet counts. The group doesn't specifically deal with ITP, but is a good source for information using magnesium to improve your general health and for food-based supplements to replace vitamin pills. It hasn't helped my platelet count yet, but it has given me back my energy and helps me live with a semblance of normality.

Hi Erin,
I just wanted to comment on the IV iron infusions and platelets. Last year I had low ferritin (4) as well as low HGB and hematocrit. I underwent 10 IV infusions of Ferrlecit (sodium ferric gluconate) to treat my anemia. Those treatments did not raise my platelets (boy I wish), and that seems strange that your doctor is interested in doing such a treatment hoping it will raise your counts. Certainly do some searching for research on the topic, but anecdotally I can tell you that it had no effect on mine. It did help with my iron stores quite a bit, and I've been managing my anemia with oral iron for the last year. HGB values around 13 for quite a while, and my ferritin rebounded to 22. I haven't had it checked lately, but the treatments definitely helped with my anemia.

From hearing about the strange dosage management of your Prednisone, you might want to find another doctor and get a second opinion on treatment options. Having a high pressure doctor is never a good thing, and you have managed to get some really nice, high counts on the steroids. I agree with you on not throwing in the towel on Prednisone just yet, especially if you like managing things with it. I spent a lot of my life managing count drops with steroids, and I could often take just a single 10mg pill after being sick to pop my counts up enough to avoid symptoms. I did this on my own without a hematologist (not recommended, lol!), but it's your body and you can work with a doctor to try to experiment with lower doses overall. People here have great advice on decreasing Prednisone very slowly over a long period to avoid drastic changes and crashes. Anything above 30K with no symptoms is good, and I only see one count in your list that is barely below 30K! Good luck.

I need some advice and would appreciate some of you experienced ITPers giving me your thoughts...positive or negative.

My history: Diagnosed with ITP at 16. Did Prednisone, IVIG, Dex. Had good response to the prednisone, but when I would taper off, counts dropped and had a splenectomy because that was the standard of treatment then. How I regret that. Over the years I have had 3 or 4 relapses, usually following a fever, but they never lasted for long, about a couple months and I recovered with short doses of prednisone.

Now to the most recent episode, after 10 years of high counts (now I am age 45), I had a relapse of ITP about a year ago. I got sick with a nasty virus...sore throat, fever for 3 days. About two weeks later I noticed the bruising & petechiae and knew my counts were low, down to about 25K. I followed up with my old hemo who I hadn't seen in 7 years. I started on prednisone 60 mg and counts went up. I didn't care for his office staff and it was a challenge getting results to my blood tests so I changed hemos. The one I have been seeing for about the last 8 months is a very highly rated hemo, the lab is state of the art and all of my results are online within a couple hours.

Now, getting to the point, I am fortunate that I respond to prednisone, however I won't agree to a super high dose anymore like I did in the past because my body can't tolerate it and I have had an arrhythmia and prednisone makes my heart race. So being that I won't take a higher dose than 60 mg initially, but taper to 40 mg rather quickly, my counts don't rise as fast as they have in the past. Anyway, my counts have been up and down for the last year...25K, 153K, 44K, 71K, 264K, 50K, 83K, down to 38K up to 352K and back down to 153K at last count. I know most would say those are great counts, but they usually drop down when I taper below 20 mg of prednisone, but I think that they problem is that this hemo wants me off the prednisone so fast and she has played with my dose so much. I have been up and down bouncing back and forth with dosage from 30 mg to 10 mg back up to 20 mg back down, etc. Also, I have been sick twice in the last 6 months and both times my counts dropped again so then she wants me to up the dose and cut it down again in a couple weeks. Basically, she just wants me off the prednisone. (Not to mention she doesn't get the tapering slowly part.) She says that since my counts drop below 20 mg of prednisone it means that I am becoming refractory to it, but I disagree. I think because she has played with my dose so much, my body hasn't had the opportunity to even out. She wants me to take rituxin, but I don't want to. I am not someone who handles drugs well in general. I would rather deal with the effects of the low dose of prednisone than the unknown effects of something stronger. I don't really see where any of the other treatments have been proven to be effective. I am not convinced some of these other treatments are beneficial and I am concerned about the long term effects. I am not in a crisis and I am not a drug taker and avoid them at all costs. I say, what the heck is the big deal, not that I want to take prednisone, but it does work. Also, my insurance sucks and I can't afford to try a more expensive therapy that might not work and cause me to miss time at work and leave me with lots of medical bills. The doctor is basically saying that I need a back up plan if my platelets drop again and I am feeling pressured. Can someone shed a light on this? I thought to be considered refractory means that you do not respond at all? Am I wrong about this?

Also, I have extremely low ferritin (last count was 9), but I am not anemic. My hematocrit and hemoglobin are within normal range. The doctor says I should be doing iv iron and is convinced it would help my platelets. Any opinions on this? Has anyone had iv iron and seen it positively effect their platelets?

I would appreciate your feedback.

Thanks,

Erin

Just as a quick update; ironically, I had a bad fall when I was running this morning . My legs gave out on me less than one mile into my run. My knees and hands got the brunt of the damage, and I was able to avoid hitting my head on the pavement. Immediately after though, I got scared because my doctor told me to go the ER if I ever fell hard and I was bleeding pretty heavily from my hands and knees. Well, I didn't feel bad enough to call 911 (which in retrospect sounds pretty dumb), so I called to speak with the on call nurse and explained my ITP/fall situation. She triaged me and told me to call my hemo later today. I called my hemo's office and asked if they could test me for anything else, because I continue to get weaker. All this time I have been telling myself that this weakness is just psychosomatic based on what my doctor has told me, but, after today, I'm more concerned that something else is wrong.

Sandi-No, no one has ever been able to explain to me the reason why my RBC counts are consistently low. My hemo said that as long as my hematocrit was normal, then there was nothing to be concerned about. I did have a bone marrow biopsy done, which came back normal. Not sure why I continue to have enlarged RBCs and lower than normal RBC counts along with low platelet count. The scarier thing is, I don't think my doctor has a clue either :side:

Went to Doctor today - said that he saw a "few" lymphocytes in bone marrow, but that could be normal. Waiting until Wednesday afternoon now for results that will tell us if I have an abnormal lymphocyte population. He is concerned about the anemia right now Hematocrit 26 and hemoglobin 9.2 and my white blood cell count is a little low at 3.8. Also my neutrophil count is a little low at 1.29. He also said I have increasing macrocytosis. Does anyone have experience with numbers like these and been diagnosed with ITP at the end of it all?

BMB was painless! Just waiting for results now. Doctor said I should get them Friday.

I know you said I shouldn't analyze CBCs too much, but the scientist in me just can't help it...

I am trying to figure out if my anemia can be explained by my heavy periods. In December my hematocrit was 39.5 and now it is 26.4. In between I had six periods. I found that 3% points on the hematocrit corresponds to a unit of blood loss. So that would be like losing about 0.7 units of blood (about 325 mL) each period and having no recovery of RBCs in between. Does that sound plausible to you? Can anemia also be explained by bruising?

Thank you!

Hello,

I am a 32 year old woman. I had a low platelet count December 28, 2015 of 71 which was missed by my OB/GYN. She told me my blood work was normal. It was only after I requested my records after being sent to the ER that I saw that this was starting back then.

I was sent to the ER on April 29 with a count of 18 after my primary care doctor ran a CBC because of bruising and petechial rash. Since then I have been on prednisone between 60 mg and 40 mg per day. Initially after 4 days of 60 mg of prednisone I had an increase in my platelet count to 40 and my primary care doctor quickly tapered me to 40mg of prednisone after which my platelets dropped down to 20 where they have been hovering around ever since.

I went back up to 60 mg of prednisone per day for a few weeks with no increase in my platelet count so the hematologist tapered the dose to 40 mg per day. Last week I had IVIG and this morning my platelet count is 12.



Has anyone else had the experience of having ITP and having no response to prednisone and IVIG?

I am also anemic HEMATOCRIT 26.4 and HEMOGLOBIN 9.2. In December I was not anemic at all HEMATOCRIT 39.5 and HEMOGLOBIN 13.1. Also my iron tests were all normal. In anyone's experience are six months of blood loss from heavy periods enough to explain this anemia? I have also had bloody mucus when I blow my nose, but no active nose bleeds.

My hematologist is confident that it is ITP, but I pushed him a little about how he knows it is not bone marrow failure and he is going to do a bone marrow biopsy tomorrow. I read that being on prednisone can effect the results of the bone marrow biopsy. Has anyone run into this problem?

Thank you very much for your time!